I've been caring for my husband since September. He has motor neurone disease which is developing rapidly as is our knowledge of this new world. I expect the hard work, sleepless nights and so many levels of worry, about now and the future but there are some problems I didn't expect. The reaction of some, those who stay away, those who are angry and take it out on those actually doing the caring. Families member who 'do' denial, do diminish the impacts and become distant or criticise from afar. I am sure this must be normal and despite trying to just focus on my husbands needs, the hurt these family members are causing occupies much of my head space. I don't suppose there are any practical solutions and trying to talk it though has been disastrous on the few times I have tried. I thought all the relationships were in a much better place and I'm devestated.
Alison, I'm so sorry this is happening. When it became apparent our son had severe learning difficulties both sets of grandparents went through a phase of there's never been anyone in our family "like that before". He's now 40, but your post immediately reminded me of all the hurt it caused. Neither set of grand parents EVER took him out for the day, husband's parents would look after him at their place, not my parents. Our lives had changed forever we needed all the help we could get, but everyone stepped back. Horrible.
You now know how selfish all these people are, seen them in their true light. They are concerned about their own feelings, not yours. You are in a terrible situation and they are making it even harder. I'm sorry you are being let down so badly, how can they possibly criticise in these circumstances???
Don't put up with it. Tell them to leave if they won't help if they are visiting, or tell them they have no right to criticise and put the phone down. Is your husband now getting Continuing Healthcare services?